Thanks for your discussion about immune diseases and the COVID shot. I have an extremely rare Immune disease that currently has NO CURE ... with drugs you can stay in remission. It is MYASTHENIA GRAVIS - OCULAR and GENERALIZED. I asked doctors before I got the two Moderna shots in April and May 2021. They told me that Moderna Covid shot was safe ... as it was a DEAD VIRUS SHOT ... so I was safe .... as my immune system is TOAST ... with over 2000 mg of CELLCEPT drugs daily. (I can not risk getting any infections ... already had November 2020 in hospital with SEPTIC BURSITIS of left arm)
They said to avoid SHINGLES and other similar shots as they use live viruses. The doctor was less certain if MODERNA shots would keep me safe from the COVID. I did not have a bad reaction to the two shots .... but he did not know for certain if they would work on me either to protect me. But so far ... I have not had a MYASTHENIA GRAVIS CRISIS or been to the hospital in 2021.
The doctors in my area were totally CLUELESS and never could diagnose my MYASTHENIA GRAVIS for eight long, suffering months .... and three of them were HOSPITAL NEUROLOGISTS. I was diagnosed by an intelligent floor nurse at the second hospital .... who recognized my MG symptoms ... as she had other patients at her hospital that had the 8 or 9 symptoms of MYASTHENIA GRAVIS ... like I did and all the doctors ignored my troubles and guessed wrong ....... NO ONE can have all your symptoms and only one disease.
I was weaned off HIGH DOSES of PREDNISONE for my Myasthenia Gravis and Acute Respiratory Failure on November 27th of 2020. It was nasty. It... also with prescribed STATIN drugs .... gave me MEDICALLY INDUCED DIABETES II ... and I never had diabetes ever in all my years. My blood meter scores with PREDNISONE and STATINS were 350, 400, and off my meter HIGH. My doctor finally tapered me off and killed the INSULIN LANTUS shots a month ago .... that the hospitals forced me to take for the last 18 months. Also PREDNISONE gave me weight gain and aggravated ONSET INSOMNIA that Myasthenia Gravis gave me and still prevents me from falling asleep in a timely manner ..like everyone else. I have been off PREDNISONE for a year now .... and my blood meter numbers dumped to 110 and under ... once PREDNISONE cleared out of my body .... but they still will not kill off my Rosuvastatin. that replaced Atorvastatin.
Editor's Note: CORRECTION: A new shingles vaccine (Shingrix) was approved by the U.S. Food and Drug Administration in 2017. This new vaccine is inactivated, meaning it uses a dead version of the virus, eliminating the risk of transmission. (The previous, older shingles vaccine (Zostavax) was a live-attenuated vaccine, meaning it uses a weakened form of the live virus.)
I was diagnosed with AIHA back in 2006 and was on prednisone for two and a half years after that. I had a splenectomy and that helped me to stop the treatment with prednisone. Being on prednisone was a nightmare for its side effects. I consulted with my family doctor if I should get the Covid19 vaccine, and after reviewing my clinical history, he agreed with me that I should wait until a vaccine without this MRNA technology comes. He's very concerned that if I get any of the MRNA vaccines, I have big chances of developing AIHA and need treatment with prednisone again. He advised me to wait until more research related to AIHA is conducted and a different vaccine comes.
Now, I've being pressured by my employer to get this vaccine at risk of losing my job. The tribunal in charge of medical exemptions for the Covid19 vaccine won't accept my doctor's note.
Has anyone been in this situation?
Hello! My question is about your splenectomy. I'm wondering how it has effected your life in regards to being immune compromised? And also, have your AIHA symptoms subsided post splenectomy? Drs have recommended splenectomy to my husband, we are weighing the pros and cons.
Thank you in advance!
Hello! My question is about your splenectomy. I'm wondering how it has effected your life in regards to being immune compromised? And also, have your AIHA symptoms subsided post splenectomy? Drs have recommended splenectomy to my husband, we are weighing the pros and cons.
Thank you in advance!
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No. I decided not to get it on my own. I also have APS, which causes my blood to clot abnormally.
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2 ReactionsThanks for your discussion about immune diseases and the COVID shot. I have an extremely rare Immune disease that currently has NO CURE ... with drugs you can stay in remission. It is MYASTHENIA GRAVIS - OCULAR and GENERALIZED. I asked doctors before I got the two Moderna shots in April and May 2021. They told me that Moderna Covid shot was safe ... as it was a DEAD VIRUS SHOT ... so I was safe .... as my immune system is TOAST ... with over 2000 mg of CELLCEPT drugs daily. (I can not risk getting any infections ... already had November 2020 in hospital with SEPTIC BURSITIS of left arm)
They said to avoid SHINGLES and other similar shots as they use live viruses. The doctor was less certain if MODERNA shots would keep me safe from the COVID. I did not have a bad reaction to the two shots .... but he did not know for certain if they would work on me either to protect me. But so far ... I have not had a MYASTHENIA GRAVIS CRISIS or been to the hospital in 2021.
The doctors in my area were totally CLUELESS and never could diagnose my MYASTHENIA GRAVIS for eight long, suffering months .... and three of them were HOSPITAL NEUROLOGISTS. I was diagnosed by an intelligent floor nurse at the second hospital .... who recognized my MG symptoms ... as she had other patients at her hospital that had the 8 or 9 symptoms of MYASTHENIA GRAVIS ... like I did and all the doctors ignored my troubles and guessed wrong ....... NO ONE can have all your symptoms and only one disease.
I was weaned off HIGH DOSES of PREDNISONE for my Myasthenia Gravis and Acute Respiratory Failure on November 27th of 2020. It was nasty. It... also with prescribed STATIN drugs .... gave me MEDICALLY INDUCED DIABETES II ... and I never had diabetes ever in all my years. My blood meter scores with PREDNISONE and STATINS were 350, 400, and off my meter HIGH. My doctor finally tapered me off and killed the INSULIN LANTUS shots a month ago .... that the hospitals forced me to take for the last 18 months. Also PREDNISONE gave me weight gain and aggravated ONSET INSOMNIA that Myasthenia Gravis gave me and still prevents me from falling asleep in a timely manner ..like everyone else. I have been off PREDNISONE for a year now .... and my blood meter numbers dumped to 110 and under ... once PREDNISONE cleared out of my body .... but they still will not kill off my Rosuvastatin. that replaced Atorvastatin.
CORRECTION: A new shingles vaccine (Shingrix) was approved by the U.S. Food and Drug Administration in 2017. This new vaccine is inactivated, meaning it uses a dead version of the virus, eliminating the risk of transmission. (The previous, older shingles vaccine (Zostavax) was a live-attenuated vaccine, meaning it uses a weakened form of the live virus.)
Hello! My question is about your splenectomy. I'm wondering how it has effected your life in regards to being immune compromised? And also, have your AIHA symptoms subsided post splenectomy? Drs have recommended splenectomy to my husband, we are weighing the pros and cons.
Thank you in advance!
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1 Reaction@annwsk Welcome to Mayo Clinic Connect! I’m glad you found this site. This discussion is old so I’m not sure if @laurac is still active on MCC but we can wait and see.
https://www.mdpi.com/2075-4418/13/18/2891#:~:text=A%20retrospective%20review%20of%2030,achieved%20in%20only%20three%20out
I found this scientific article about AIHA and splenectomy . It has lots of big words so you might want to scroll down to ‘conclusion.’
It’s nice to have you here so be sure to check out the other discussions!
Thank you Becky! Yes, information was very helpful. I didn't notice how old the thread was!
Ann
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